Identifies 200 cases of a rare disease.

– thanks to the development of a census of children affected by the Spanish Association against Histiocytosis – ACHE

-the development of this census is a first step to improve the recording and analysis of the current situation of children affected by Histiocytosis in Spain

Madrid, February 2010.- within the priority objective of the Spanish Association against Histiocytosis, promote research and knowledge about the disease, have been the results of the first census of affected children of Histiocytosis in Spain, an initiative which has counted with the support of the innocent not guilty Foundation and the Spanish Federation of rare diseases – Feder-. For its implementation has counted with the collaboration of the DRA. Itziar Astigarraga, Chief of Pediatrics of the Hospital crosses Barakaldo, Member of the Scientific Committee of the international society of Histiocyte and State Coordinator of the Histiocytosis protocols within the Spanish society of Haematology and paediatric Oncology.

The Census collects data from 214 patients under the age of 18 affected by Histiocytosis since 1995 until 2009. A total of 32 hospitals in almost all the autonomous communities have been involved.

Among the conclusions that have been drawn from the analysis of the census are not differences in the incidence of the disease according to sex and the presence of a greater number of cases in the first 4 years of life (59%) than in older children. On the other hand, 214 cases surveyed, only 146 children is known its current state.

According to Raul Suarez, President of Asoc. Spanish of Histiocytosis the development of this census is a first step to improve the recording and analysis of the current situation of those affected by Histiocytosis in Spain and will result in a greater knowledge of the scope and monitoring of this disease. In addition will allow draw attention to the health authorities of the State and communities autonomous on the situation and problems that faced by those affected by this rare disease ”

the Census registration can also know medical practitioners in each province or autonomous community have experience or contact with the disease, which is useful as a reference for new affected.

Histiocytosis is a heterogeneous group of rare diseases that primarily affect children, but can occur at any age. It essentially consists of a dysfunction of the immune system which produces an abnormal increase of certain cells (histiocytes) that can form tumors and affect various parts of the body requiring in many cases treatment with chemotherapy and bone marrow transplant.

The knowledge about this disease is limited and many patients, adults and children, suffer delays in diagnosis and treatment. Although the mortality figure has been reduced, yet many patients have a poor prognosis and others suffer major consequences.

According to the Spanish Federation of rare diseases (ERDF) 5 years is the average estimated time lag between the onset of symptoms, unless a person with a rare disease Gets a correct diagnosis. Five years involving consequences of all kinds and severity in the evolution of the disease.

ERDF is carrying out an awareness campaign that aims to claim the start-up of centres of reference, as well as the promotion of research for rare diseases. This campaign has its central axis on the world day of the ER, which is celebrated on 28 February and develop hand in hand with the European Organisation for rare diseases (Eurordis).